8 Ehlers-Danlos Symptoms That Are Secretly Kind Of Fun

No matter which way you spin it, Ehlers-Danlos syndrome (EDS) is generally not a great time. EDS is a rare genetic condition that affects connective tissue throughout the body. It causes a range of symptoms– most famously, joint hypermobility and flexible skin– but can affect essentially any organ system. You can read more about it here.

I’ve written a lot about EDS problems, from chronic pain and nausea to potentially serious heart problems. But while those experiences range from unpleasant to legitimately frightening, EDS is a part of my life, whether I like it or not. Recently, I’ve been thinking about the parts of EDS that I don’t mind so much, or symptoms I even kind of enjoy.

Here is a list of eight Ehlers-Danlos syndromes symptoms I secretly think are pretty fun:

1. I can scratch my whole back myself

AND zip up the top of my dress myself– thanks joint hypermobility!

2. I can gross my little cousins out

TBH I’m not the best at knowing how to talk to kids, but I CAN show them my weird fingers, which is good too.

3. I’m a total boss at cracking joints

Or as I call it, popping Mother Nature’s bubble wrap.

4. My scars make me look like a woman of mystery

EDS causes easy skin-tearing and isn’t conducive to quick wound healing, but that’s all part of my lady-with-a-dark-past aesthetic.

5. I can sleep in airplanes really easily

Chronic fatigue + my ability to contort my body into positions that would be uncomfortable to a normal person = perfect recipe for air travel rest.

6. Although my skin is delicate, it is also soft like beautiful baby seal fur

Or expensive toilet paper!

7. Nobody can guilt me into running marathons

I know it’s not great to treat your chronic illness like an awesome gym class note– it’s a pervasive and harmful stereotype that delegitimizes real and painful experiences. But with that said, there’s nothing wrong with taking a little bit of joy waking up and knowing you don’t have to get up and go to some Turkey Day Fun Run.

8. One time the doctor prescribed me a daily bottle of Gatorade to replace my electorolytes and it was awesome

All the fun of running marathons but none of the marathon!


Share this post

We believe rare disease patients are people, not a diagnosis. Through education, awareness and some humor, we help patients, caregivers and support persons by providing relevant and often inspirational news and stories.
Our goals are to share stories, cultivate strong community, provide the latest medical findings, connect people and pioneer production of patient worthy information. Help us attain these goals by telling us a little bit about yourself!

© Copyright Patient Worthy

Close Menu